There are some simple joys that are easy to take for granted; a long walk on a cool day, having a hot dog at the stadium, splashing around in a pool, and so on. For one little girl, a mysterious medical condition kept her from participating in any of those activities.
Santa Clarita, California mother, Andrea Fulkerson first noticed something strange about her daughter, Savannah, when she was 4-years-old. Andrea told ABC News what she noticed.
“We’d be outside and she’d start screaming. We’d be at the pool and she’d scream she’s ‘burning’ and she wants to go in. And I’d be like, ‘we just got here, what is the problem?’ And she’d be like, ‘I hurt. I burn. I burn. I want to go in. I can’t take it.'”
For five years, 11-year-old Savannah Fulkerson and her family had no idea what was wrong with her body. The pain she described felt like hot lava was being poured onto her skin and doctors had no answers. Savannah talked about what it was like.
“I would like really itch a lot and it would turn my hands and my feet really red. if I scratched too much it would like blister, kind of, and then scar.”
Trying to combat her daughter’s pain, Andrea tried placing her hands into bags of ice or drawing cold baths for her. Nothing she tried seemed to help.
Andrea took Savannah to the doctor for the issue several times over the years. Again and again, she was told that Savannah had eczema. Andrea was skeptical.
“I’m telling [the doctors], ‘It’s got to be more than eczema. You don’t cry like that from eczema.'”
Finally, the Fulkersons met Dr. Minnelly Luu of Children’s Hospital Los Angeles.
Dr. Luu noticed red welts on Savannah’s hands and fingers and suspected erythropoietic protoporphyria, or EPP. A simple blood test later and it was confirmed. EPP is an incredibly rare genetic condition that often goes undiagnosed. There is no cure for EPP and the burning symptoms can only be managed by limiting the amount of sun and fluorescent light. Savannah would have to adapt.
“I can’t be out. Like, I can never go to the beach. I can never go to a sun-lit pool . I have to be in the dark. Dark is my home.”
Savannah has had to deal with her peers teasing her for her condition. They called her “old lady hands” due to the scarring. They’ve also referred to her as “umbrella head,” making fun of the large hat that Savannah wears when she goes out in the daytime to protect her skin from sunlight. She doesn’t let that get to her though. While she might have to spend a lot of time in the dark, she still managed to keep a sunny disposition.
“I just try to think positive, because I know kids somewhere else have it way worse than me.”
Watch Savannah talk about EPP in her own words.
It’s a tragedy that Savannah can’t go frolic in the summer sun like any other kid. However, she seems like she’s adapting well to her condition and her attitude is absolutely amazing. What an incredibly brave little girl!